Tuesday, January 23, 2007

It was a cold and windy day, colored Northern California gray. I was a student back then, sitting in the Union cafeteria, working on the daily crossword puzzle. A door opened, a cold draft blew in, and I shivered. Thus began my multi-month odyssey through the medical system. [Open the post to continue...]

Errata:

Apologies for being a monomaniac. I'm still pleading for your help ( aka, story submissions... private line: nunnshabit@yahoo.com, business: info@americanassociationofpatients.com ). Trivia tid-bit... the Open Letter to Jacob Weisberg has been making some rounds, and found its way to my inbox. G_S, you can be an alarmingly insightful guy.

I'd welcome feedback on the story in this post... I hope to use some version of it (one must give of oneself before one can ask as much of others), but I'm open to suggestions.It was a cold and windy day, colored Northern California gray. I was a student back then, sitting in the Union cafeteria, working on the daily crossword puzzle. A door opened, a cold draft blew in, and I shivered. Thus began my multi-month odyssey through the medical system.

I’ve shivered from cold thousands of times before. Nothing remarkable had ever come of it. But this time, the shuddering didn’t stop. The muscles in my upper body would clench, vibrate and release… over and over again… like a full-body pulse.

I was pretty concerned by this, so I focused all my willpower on bringing the shudder under control. Within a few minutes, my shoulders relaxed. I went to my afternoon class with my hands shaking like a Parkinson’s patient. Later that evening, my right arm gradually quieted down.

“At least it’s passing. By morning, I’ll be fine.”

It was hard to sleep with my arm convulsing every few seconds. I’d lie down, try my hardest to relax, and pray that my left arm would fall to sleep. After several fruitless hours, I abandoned all hope of sleep. I had a productive night, reading through dawn.

The next day, I attended a friend’s dissertation defense. I mentioned my problem, and showed off my arm’s strange performance act. Back then, I was accustomed to all-nighters. This couldn’t be something two days of exhaustion wouldn’t cure. But it was hard to sleep with my arm so hyperactive.

By dawn, I was entering my third consecutive day without sleep. I remember hearing as a boy that a man loses his mind after four days without sleep. An elderly Korean War vet had told me that, and I assumed he had grounds to know. I went to the student health clinic. I was told that the soonest possible appointment would be two days hence.

At the office that afternoon, my boss, an Assistant Dean, noticed that I was haggard and shaking. I explained the situation. She hit the roof and arranged an appointment at the clinic for first thing the next morning.

When I arrived for that visit, I was entering the dreaded fourth day without sleep. All this time, the muscles in my left arm had contracted and released with the distracting regularity of a metronome. The clinician told me I had allergies, and offered some antihistamines.

My boss was livid. I was walking through a dream. Calls were placed to the local hospital—a teaching institution—and I was given a priority neurology appointment for the next day.

The next morning, I was sharing breakfast with a disabled Olympian. She wanted to know what five days without sleep felt like.

“An ocean storm inside an eggshell.” I was spending a lot of energy staying calm—speaking slowly, deliberately, without affect. Emotionally, I was torn up inside—ranging from tears to laughter to anguish within the space of seconds. And all that time, that damn arm just kept pulsing, pulsing, pulsing. I wanted to cut the damn thing off and be done with it.

That afternoon, at my appointment, I was seen by a student intern. She looked at my arm. Took my blood pressure. Looked at my arm. Hit my knee with a hammer. Looked at my arm. Then she left the room.

When she returned, there was another intern. “Look at this.” He looked at my arm. Pulled up my eyelids. Looked at my arm. Pressed my neck. Looked at my arm. They both left.

When they returned, they were accompanied by another man, introduced as the “Chief Resident.” He performed all the same gestures and spent a longer time gazing ponderously at my arm, fist pressed to chin. All three left.

When they returned, they had an older man with them—apparently a full-fledged doctor. Poke and look, poke and look, questions all around. By now, my symptom report had been learned by rote. And out he went, gaggle of residents in tow.

Next came a second doctor, no more successful than the first. When he returned, he brought the whole mob—two doctors and three residents, along with a blonde woman identified as the Chief Neurologist.

“At last, I’ve reached the head of their tribe.”

I was examined anew. I had to repeat my answers to previous questions. I undressed. Was pushed and pressed and poked. The Chief Neurologist fled, leaving her posse behind.

When she returned, she had a bald man with her—a “visiting expert” with a heavy German accent. Looking, looking, looking, then the whole troop stampeded out the door.

I didn’t like what I heard next. Whispery shouts. “It must be a tumor.” “I haven’t seen anything like it.” “So what should we do?” They were conferring just outside the door!

The herd burst back in. Their leader, the Chief Neurologist, asked whether I’d be willing to spend the night?

The rest of the day was an out-of-body experience. I moved through the department like animated meat. Things were taped to my head. Strobes were flashed in my eyes. I was laid onto a gurney. A needle went into my veins. I finally slept.

When I awoke, days had passed. I was fiending for a cigarette. A doctor arrived.

He gave me a long list of conditions I conclusively didn’t have. My arm was still spasming.

“So what is it?”

“We don’t know.”

“So what now?”

“Well, the good news is we know all the things that could probably kill you. And it isn’t any of them.”

“So what is it?”

“We don’t know.”

“So what now?”

“Come back for observation in two weeks.”

“How will I sleep?”

“Take this prescription to the pharmacy. Take a dose of Atavan, a muscle relaxant, every four hours. You’ll sleep.”

The next six weeks were a groggy time. My arm kept twitching, but I often slept.

On my third visit, the Chief Neurologist wanted to know if I was experiencing any stress.

“I don’t think so. I hear my cousin brought a gun to the ceremony, so I’m not too busted up over missing it.”

“How’s your love life?”

“Could be better. How’s yours?

“Have you had any romantic stress?

“Unrequited love. But they say that’s a bore…”

“What can you tell me about that?”

”What is there to say? I really like him. He doesn’t feel the same for me.”

“Him? Don’t you mean ‘her?’”

“No, I don’t mean ‘her.’ I mean ‘him.’ He’s a guy.”

“Are you a…” and here, her voice drops to a scandaled whisper, “… a homosexual?”

”I’m queer.”

“That’s a self-hating word. There’s nothing wrong with…” and here she drops back into her hushed register” … with homosexuality.”

“Well, I don’t like that word. It’s a doctor’s word, and it reeks of pathology. I consider myself queer.”

“But queer is an insult.”

“Not to me.”

“Do you hate yourself?”

“Just the opposite. I’m full of myself.”

“How long have you known that you’re a… a, homosexual?”

“Two years.”

“That short?”

“It feels long.”

“How did you feel when you came out?”

“Like a weight had been lifted from my soul.”

“I think you’re depressed about being gay.”

“I don’t.”

“Well, it wasn’t long ago. And that must be a source of stress. I think your arm is psychosomatic. And your recent discovery of your… of your homosexuality… that must be related.”

“You’re saying my arm twitches because I’m depressed?”

“I think so.”

“And I’m depressed because I’m gay?”

“Probably so.”

“Doest it matter that I don’t feel depressed?”

“How would you be able to tell?”

I was young. And in college.

“Fair point.”

“I want to prescribe Zoloft, an anti-depressant, and refer you to a psychiatrist.”

“Is there nothing else you can do?”

“I’m pretty sure there’s nothing physically wrong with you.”

“Well, OK then. You’re the doctor.”

My boss was skeptical that I was twitching from depression. But, she knew a wonderful shrink I could see. He was gay too!

By the time I saw him, the Zoloft had kicked in. I know folks whose lives were saved by anti-depressants. So don’t get me wrong when I say that Zoloft offers emotional stability—but only a notch above the humanly tolerable. Being on Zoloft had all the joy of watching puppies die, 24/7. I’d never been so relentlessly and consistently unhappy in all my life.

I didn’t want to kill myself. But I could hardly bear living that way.

After two weeks of sessions, the psychiatrist decided I wasn’t depressed, and gave me permission to lay off the Zoloft. The four-hour depressant struck him as excessive, so I was prescribed a daily dose of Valium before bed.

The next three months were a bizarre time. I struggled through school, cutting back my course load and my work load. A generous friend who’d dropped out into Silicon Valley wealth covered my tuition shortfall. My grades suffered.

The psychiatrist was really interested in my sexual history. He maintained that my arm was a physical problem. We tried a variety of solutions. I took anti-inflammatories. Vitamin supplements. He doped me up with Barbitol (aka “truth serum”) and dredged my subconscious. I’ll never forgive him for turning off the camera when the topic turned to sex. I had demanded a videotape as a precondition to the procedure. The rest of our sessions he would selectively reference things I’d revealed in a conversation only he remembered.

He finally hit upon a radical suggestion—I should see an acupuncturist. I wasn’t a believer in Eastern Medicine, and had begun to reconcile myself to a future as a quivering wreck. But I hadn’t yet disobeyed a doctor. If he thought it might work, why not give it a try?

I expected a timid little Chinese guy, spouting profound non-sequiturs. Instead, I got a boisterous, burly Brooklyn Jew. He gave me a brief personal history—it was the Sixties, flower-child, kicking it in China, learning the art of acupuncture…

“... Do you think Eastern Medicine works?”

“Honestly?”

“Yes.”

“No.”

“Well, let me explain acupuncture to you. Nobody knows how it works. By all accounts, it shouldn’t. But, it’s five thousand years old, and people can get really good at something with five thousand years of practice, even if they don’t know what they’re doing.”

“Well, OK then.”

I gave him the same report as I’d given the doctors. Sudden shivers. Unrelenting spasms. The end of sleep.

“Did you feel a breeze when you shivered?”

“As a matter of fact, I did.”

“Oh, my gosh! We call that an ‘evil wind!’ I’ve heard of it before!”

“Have you ever seen it before?”

“Honestly?”

“Yes.”

“No.”

“Well, OK then.”

I was directed to lie down on the table. He started throwing needles into my body like little javelins. I didn’t feel any sensation.

He left the room.

I laid upon the table, pierced like Saint Sebastian. A warm feeling radiated across the surface of my skin. I could sense certain points… my temples, my ankles, my dick… they were alive with sensation.

After twenty minutes or so, he returned.

“Feel any different?”

“Not much.”

“Your arm is still twitching.”

“I know.”

“Well, I’ve never seen this before. There was no reason to think it would work. But I’d like you to come back next week.”

“OK.”

He pulled out the needles and instructed me to get dressed. Pulling on my socks, I was surprised to find a needle sticking out of my ankle.

“You missed one.”

“I did? Whoops! Just pull it out.”

I did.

I didn’t leave with optimism. The way I saw it, this was another strange remedy tried. Another oddball long-shot for my shrink to cross off his list.

The next day, the twitch slowed markedly. My arm went from convulsing once per second to once per minute. On the second day, it stopped entirely. I’ve gone seven years without an involuntary twitch.

Four days after that appointment, I called the acupuncturist to report my condition.

Well, it seems to me like both your western and eastern doctors were willing to confess ignorance and act on their best guess; it's just that you got better the day after your visit to the acupuncturist. Re: hesitance in attributing causality -- admirable, but insofar as many will see this as validation of eastern over western medicine, it seems to me one of those things that's more likely to frustrate doctors, not bring them closer.

Did think the conversation about sexuality funny -- the price we pay for recruiting the socially inept to medicine for their rote memorization skills, I guess. The decision to refer to a psychiatrist probably correct (in the sense that I would have done the same), but stated reasons bizarrely wrong.

An episode from my side:

Late 30s-ish single mother of 3, working two jobs to keep ends meeting came to my neuro team complaining of progressive weakness. Distribution suggested neuropathology versus muscle. I can't remember the details, but some finding suggested spinal cord lesion; others suggested pathology inside the cranium. An MRI confirmed, with multiple lesions. At this point our choice was between multiple sclerosis and another conditon -- neurosarcoidosis -- that can pretty much look like anything, but specifically can look like ms. Problem was, none of our confirmatory tests really revealed anything. And none of the standard medications helped her.

She was good natured about it all -- the hospital offered her the chance to relax at first. We subjected her to a similar barrage of questions from residents and attendings, even subjecting her to "Professor's rounds," where the department chair examines her in front of all residents and a handful of students, pointing out what he's seeing and thinking as he goes along. Meanwhile, right in front of our eyes, she's deteriorating. Her pupils now move asymmetrically, her weakness is worse. We're ramping up doses, moving down the list of medications from conventional to more exotic, and nothing's helping.

I left the service and she was still there, tired of being made a teaching example; she just wanted to get better and get out. Almost every morning when we saw her, she was crying. I don't know how it was resolved.

I don't really know where I'm going with this, except to say that as a doctor, you're always thinking that a diagnosis or at least successful treatment is going to come with whatever you try next, even if you're more or less clutching at straws. Everyone on the service felt terrible that we couldn't come up with an answer.

Hi, A-B. Thanks for writing in. I'm embarrassed by how wrong I got it. My misfortune was getting sick, not the doctors. I need to work on that conclusion.

That's a disconcerting anecdote. Would you mind if I used it in some capacity at American Health Stories? And would you be interested in sharing about your own experiences as a patient?

My frustration with the doctors... it was real. When the neurologist bounced me out for "depression" I remember feeling rejected. "Six weeks ago, I was the highest priority you've had? Now, because you can't figure it out, treatment is irrelevant?"

I was also annoyed that that the doctor took my self-report seriously (maybe she shouldn't have) over issues like family loss and work pressures... just accepting my speculations that they weren't responsible. But the minute we broached my sexuality, nothing I had to say mattered anymore. I was clearly deranged about sex. So, off with me.

To the psychiatrist, I'm both enormously grateful and endlessly peeved. He went to bat for me on trying various solutions. But there were also times his treatment seemed exploitative. I was really miffed when the videotape cut out halfway through. Not only did he shut off the camera. He asked the observers to leave the room. That might have been fine if I trusted him. But I didn't, hence the request for a videotape and observers.

4. Like Gregor, I thought the discussion of sexuality was amusing and well-presented.

5. I let myself get pretty fat four or five years ago and developed some problems with acid reflux (and other fat-guy issues, like snoring and sprained ankles). Didn't expect that diagnosis was correct, since the pain was deep in my guts, and not in my throat or chest as I'd ever experienced heartburn. What's more, the medication did not a damn thing. And avoiding onions and tomatoes was a special torture.

Eventually, I got an endoscopy done, and nope, nothing there. Smooth and unlesioned. (I'm scared of anaesthesia, and asked for a reduced dose of fentanyl, which made me only mostly knocked out. I remember surprise at the lack of a gag reflex, and also saying "hey, is that my duodenum?" Good times.)

Anyway, fairly confident now in my clean bill, the reflux magically went away. A function of stress, is the best guess. Though it didn't register at the time, looking back, I can see some problems at work--I thought I was going to lose my job--and in the middle of a long freeze at home. No doubt it's all related.

Sorry for being insufferable, K. I kind of feel like Andre the Giant in that fight scene from The Princess Bride, where he's apologizing for getting his ass kicked. I'm rusty and painfully self-conscious.

Of course "depression" could have been a factor (though I'd think the seven year gap attenuates the relation). But what kinds of assumptions are we dumping into the category of "depression" once it becomes emotionally unrecognizable to its "sufferer?"

If it's a malady that lacks any precise pattern of symptoms (like, say, feeling depressed) then how useful is it as a diagnostic category? Is it wise to medicate "catch-all" diagnoses?

Does it matter that the only medical diagnoses I received were cross-disciplinary (a neurologist pronounced me depressed, the psychiatrist maintained until the end that it was neurological)? Doesn't the idea of "psychosomatic" - especially in a case like mine - reek of a false "mind-body" dichotomy?

I wouldn't rule out stress as something quite able to fuck you up physically as well mentally. But yes, it also seems to be a weak catchall for "we don't know." Zoloft under your circumstances seems hasty, and agree that your doc could have been much more up front.

Rather cynical about acupuncture, massage, etc as curative, but it damn may well help a body relax, and certainly worth it there. (And hey, if it worked by weird spirit mojo, I say take it.)

But no judgements whatsoever on your condition, really. My own indigestion was evidently stress-related. Constant arm spasms seems a little more out of the norm.

Stress does screw you up. And that was without the health part. Sorry Geoff, I like you, you are a good writer. But it seems to me you may have multi-tasked your way to ill health and much reduced popularity, Fray-wise. (As I recall, the ABA had a limit on the hours you could work and still be considered a full-time law student. I know people with full-time jobs, docs even, who went to law school at night, but took 4 years. Is this still in play and are you winking at it?)

I'm not sure what to make of your comment about my Fray popularity. I work as hard as I can for Slate, and I think I deliver more than they pay for. Less than you guys deserve, but that's another matter.

It may be the case that seven years ago I multi-tasked my way to ill-health. But the workload I carried then was no larger nor smaller than those I've carried before and since.

Before I got sick, I was working two menial jobs. I was a Residential Assistant... spending long nights in emergency rooms, trying to resolve domestic violence situations. And again, I was carrying a pretty heavy academic load.

And now, seven years later, I'm as spastic as ever. I appreciate and am grateful for your concern. I don't deny that I could theoretically cut back on my activities. But, I've always been a spazz. I wouldn't know how to stop.

I've always leaned on others for support, and they've never let me down. In exchange, I try to help where I can. I'm doing this project (and please do help). Next month, I'm going to do some help at the General Relief office for L.A. County. There's a lot of stuff to be done, and I don't really have any excuses.

I usually frame the question in terms of "what am I willing to lose or forsake?"

During my first few weeks back in Church, the Gospel reading came from Luke 21.

Jesus is sitting at the back of the temple, watching the almsgivers (he was a bit of a slacker, wasn't he?). Later, he gathers up his posse for a lesson. "I've been watching rich folks give money. Then this old widow came in and gave her last coppers. Verily, [that's a Jesusism] she gave more than the rest, for..." and here's where the line dropped like a hammer...

"while they gave from their surplus, she gave from her need."

I've been giving a lot of thought to that concept, especially in the terms of a moral prescription. What the fuck does it mean to "give from your need?" How could that even possibly be a good thing?

But its an imperative that resonates with me. I personally attribute this year's little breakdown to a confrontation with ambition. Since getting to law school, I'd been doing the math more and more... "I've got the right degrees, I've got the right contacts, I've got talents and experience, I'm getting the grades, the opportunities are here for the taking..."

That encounter with the hapless bank manager pushed me over the edge. She worked hard for a week to try and get her bosses to return my money. I never once faulted her.

That last day, after I'd managed to get the cash from PayPal, she was complimenting me on the clarity of a grievance letter I'd written at her request.

"I'd hope I could state a grievance clearly. I'm a law student after all."

Meanwhile, she's processing my paycheck, since it was time to take care of that as a simple "by-the-by" and she sees that I'm paid by the Washington Post.

Before, she had been sympathetic. Suddenly, she seemed afraid. "You wouldn't write an article about this would you?"

I thought it was funny and said nobody would care about my bank hassles. But her demeanor was very different... nearly fawning. It was pretty clear that an unhappy laywer-journalist is a scary thing to a middle-manager in a bind.

What really bothered me is that I enjoyed having that power. It felt good to be scary. I don't think I abused the situation... but it felt good and I wanted more of that feeling.

Then I get back to campus, and it's time to put on my power suit and beg for an entree into the world of power.

It was more than I could take. I needed to give something up.

It was the ambition or me. Now I'm in the process of rooting it out every chamber in my heart.

It isn't easy. There aren't any guarantees. But for now, I want to be less than I want to be.

Thanks for the link – I’m not much of a scripture reader. The referenced quote is: “I tell you truly, this poor widow put in more than all the rest; for those others have all made offerings from their surplus wealth, but she, from her poverty, has offered her whole livelihood."

The first part of the quote makes sense, the latter part (“whole livelihood”) does not [translation quibble? I dunno]. From what I do know about Jesus, I’m quite sure he wouldn’t have been hip on an old widow jeopardizing her well being for the sake of a religious donation. It’s entirely consistent, however, that he note her sacrifice was greater than that of people who could afford that much more.

But, why do you feel like you have to give that much more? At this developmental stage of your life, it’s appropriate to be consolidating and positioning yourself for future prospects.

This is an issue with real relevance in my life, though I’d just as soon not go into so much detail. The short summary, however, is that taking care of myself is absolutely essential if I intend to take care of anybody else. Self-sacrifice, or in the extreme case martyrdom, certainly seems noble. What’s become clear to me, however, is that nobility may be effectively masking something more along the lines of self-destruction.

“Giving from your need” at this point in your life also may involve abdicating responsibility for future acts, and I wonder if there’s a grain of self-handicapping in what you describe. Having the right degrees, the right contacts, talent, experience, grades and opportunities also means you’re setting yourself up to assume a great deal of responsibility – are you afraid of having that much power? If so, I wonder whether or not your self-sacrificing bravery may be masking a degree of (very human) cowardice – all that influence and power can be a scary thing.

And of course if you enjoy it, you might end up having to face the possibility that you’re not that different from other people.

Giving questionable advice from a great distance is sort of a specialty of mine, so here’s a little (free and suitably barnum-laden) interpretation and dubious guidance from the cheap seats to go with the preceding*.

You’ve consistently put yourself in positions you weren’t sure you were actually ready for, and you’ve never allowed yourself to process the accompanying fears – you’ve just pushed on. Now that the stakes are getting higher, that pressure of never really processing those fears is getting too great, and you’re finding yourself torn between the unpleasant prospect of dealing with them while still trying to perform, or falling into the venerable solution of enjoying the seeming invulnerability of power.

I would be concerned that some of what’s driving your philanthropic activities is a desire to retreat from this bind. It’s not so much as there’s anything wrong with that, it’s just that you want to be conscious of what you’re doing, if this is in fact what you’re doing.

So, the cheap advice – give up the ambition while retaining your power. Put your power suit back on and beg for that entrée into the world of power. Consolidate the power that you can, and then turn around and use it to benefit people. Give up some of your activities now and face the conflict you’re retreating from.

If this interpretation holds, then your philanthropy will eventually feel hollow anyway, as the covert motivations subside and you’re left only with what is manifest. The choice only seems like it’s between the ambition and you – really, the dilemma is to use the ambition to propel yourself into positions where your ability to do good is exponentially greater. Even Jesus was a pragmatist.

If you settle for being less than you want to be, then you hobble your ability to eventually be more than you are. Your driven volunteerism may not be entirely honest, and I’d like to encourage you to get a better grip on the nature of your conflict before you sacrifice too many opportunities. Psychotherapy would be good [though you might want to avoid that psychiatrist you used to see. That whole violating your agreement about taping and witnesses thing is the sort of thing that gets professionals into trouble with ethics committees and similar regulatory entities, and suggests a level of professional narcissism you might want to steer clear of. It’s possible he has a good reason, though for the life of me I can’t imagine what it would be].

Hope I haven’t overstepped too much, and I hope you’ll forgive me if I have. It’s not like you owe me an explanation or anything, but I figure if you’re putting it out there, you may be more conflicted about it than you realize.

Good luck, however you decide to go about your life.

*I’m a little ambivalent about this, in any case – I’ve a little of the Buddhist in me as well, and thoughts about abdicating power also come up. Given your rather driven nature, however, and apparent desire to be helpful to other people, I’m thinking a reconciliation that doesn’t challenge that quality could work out better for you.

That, however, may only be my inner narcissist piping up; you should be suspicious.

From what I do know about Jesus, I’m quite sure he wouldn’t have been hip on an old widow jeopardizing her well being for the sake of a religious donation.

I'm not so sure about that -- I think the call of Jesus is to a fairly radical discipleship and trust in Him. To the believer, this isn't so much jeopardy as trusting in God, though it will look ridiculous to the non-believer.

That being said, Jesus Himself didn't begin his ministry until He was 30, after having been an anonymous carpenter.

If I were to offer advice, it would be to not rush into anything. Take some time in the desert -- perhaps this upcoming Lent -- to quiet and slow things down and discern where you want to go.

I think TK is right that you want to make an affirmative decision for something rather than from something.

Wow. This isn't the conversation I expected to have. But I do appreciate the chance to talk about it. Thanks, everyone.

I think JMcG is closer to the passage's meaning than TK (that Jesus is a pretty radical guy). But it's a fair point that he says "poverty" rather than "need." In fact, I think I got the phrase "need" out of the liner notes from the Daily Missal. Though I think the term "need" taps into the allegorical import best.

The Greek term used is "husterematos" which concordances give as "deficiency, need, want." It's a term for "lack" but I can't say how accurately the word "poverty" encapsulates it.

The Greek phrase that gets translated into "livelihood" is "panta ton bion hon eichen ebalen" which I would translate as: “But from out of what she lacks for herself, she has thrown all the things she has for living.”

TK, I think there is a fine line between self-destruction and self-abnegation. Charity of the former kind is bad... it even violates the principle of charity. If I've forsaken the means at my disposal, I've deprived myself of the opportunity to be as effectively helpful as I can. Meanwhile, the latter needn't lead to self-undermining.

We live in a capitalist society. Our value is determined by our utility to others. Being useful feeds on itself. People you've helped before need help again, or refer your name to others needing help.

For me, the trick is more of a psychological one. How to avoid fetishizing the means? The money, the power, the grades, the whatever... it's difficult to live without a clear goal, but its corrosive to swap in metrics as a placeholder ("I've made x dollars, I've attained x rank"). How do you surrender the ambition and self-regard without swearing off full engagement with the world?

I'd like to return to this, but I have to get going, I'm afraid. I was interrupted by a phone call while writing this. About a week ago, I had a random idea that I passed on to a friend at PARC labs. Apparently, one of the researchers in that field would like to speak with me about it. It may have been a good idea after all... but that's a heavy surprise insertion into a day that's already got a lot of stuff brewing.

As a PS to John McG, it was exactly forty days between the moment the skies opened for me and the delivery of my first confession. When Jesus wandered through the desert, they say he was nurtured by angels. Those forty days were a period of concentrated weirdness like none I've ever experienced. It's an interesting story, and if this stuff interests you, I'd be happy to discuss it.

Thank you all for this conversation. I feel like a narcissistic fop for indulging in it, but it's been tremendously helpful for me.

Hi Geoff. Your story reminded me a little of what happened to a friend of mine. She'd suffered severe depression for years, had been hospitalized once or twice for attempting suicide, and then again for a progressive paralysis that lasted three months. The cause of the paralysis was never determined, but she eventually recovered full use of her limbs.

I was working with her some years later. One afternoon she had a seizure. I took her to emergency where they tested her for meningitis and MS. When the tests came back negative, they decided it was conversion disorder and began treating her like she was sub-human. I couldn't believe my eyes. This went on for some time - her seeking treatment, the paralysis encroaching to greater degrees, and the medical community refusing her treatment, and acting like she was a pariah. Eventually, a friend got her in to see a doctor she felt would be able to help her. The doc referred her to a neuro-psychiatrist. In order to get to see the neuro-psych ahead of his 18 month waiting list, she had to admitt herself to the psych ward and stay there for 5 weeks for observation and tests. He determined that she had some kind of chronic encephalopathy (sp?) condition, and that the scar tissue in her brain was causing the emergence of symptoms under stress. He put her on an intense physio regime, and she slowly began to get better.

The thing I found appalling about all this was - so what if it was conversion? Why is a person with conversion disorder any less deserving of medical treatment and respect than anyone else? Why are they not considered legitimately ill, when in fact they can die from their condition? It made me furious, but it's quite typical for people with mental illness to be treated with this lack of respect and denial of care. It's as if someone with a mental illness hasn't got a medical condition, but is possessed of some profound character deficit which makes them less than human. We haven't come as far from Bedlam as we'd like to think.

TK, I'd like to return... your response makes me fear I've mischaracterized myself. I didn't reach some dichotomy in which I had to choose between "philanthropy" as some abstract act of self-renunciation and "work" as the act of self-aggrandizement.

"Doing help" shouldn't be mistaken for "doing good." The latter is beyond my powers of conception. To the extent I'm an ideologue of neoliberalism, I've rejected the idea of good as a subject of abstract quantification.

"Help" is a term I can wrap my mind around--someone else's definition of "good" to which I can contribute. "Help" is as useful to Hitlers as it is to the homeless. "Good" is somewhere else entirely, and I'm quite remote from it.

To take the American Health Stories project as an example. If I pull this off, I will have helped a lot of people. On the one hand, patients will be well-served. It has the potential of being a portal for people to navigate a system that is often perplexing and brutalizing... especially to people in a state of extreme vulnerability. It has the potential of teaching "power people" how their decisions impact the lives of patients. (Do doctors realize what they're doing to their patients' credit histories by refusing to accept insurance payments?) If I'm successful, I will have pleased some number of people who happen to be well-connected and loaded (the idea-men in this project). And I'll have shown that my project management and development skills continue to operate, even on a budget of zero.

There isn't a personal downside to being successful at this endeavor. (Unless it comes at the expense of my other commitments.)

So does that mean my engagement in the project is entirely self-interested?

Well, what if I fuck up? I'll have begged everyone I know for help, and have been refused. I'll lose my credibility with many people (not least of which I'd number the users of this blog). And I'll have lost time, money and energy devoted to a worthless pursuit.

It's a classic case of risk/reward. It'd be disingenuous for me to pretend that I'm some disinterested party, seeking to give from an abstraction.

And that's something the Jesus quote seems to get at. It's not right to just give from things you can afford to lose.

I'm willing to lay it all on the line for this. The consequences of fucking up would be very real for me. I'll have forsaken the guaranteed career opportunities of 2nd year law school for a nullity. I could sour relationships that are likely to recur as I age. I'll look like a fool and a hack.

But if I pull it off, I'll have accomplished "help" for many other people, and so far as I can tell without violating my own personal sense of the "good." That's not a bad scenario.

Somewhere in life, there's a rock-bottom. No dignity, no resources, no help, no thing. It's a terrifying prospect. But I think life can be understood as a willingness to sink so low, should fate so will. It's out of my hands. I can't brake a fall. There's no sense in wishing I could. It's only be accepting the consequences of the fall that I could resume the climb.

You can use my story. I don't have much of my own experience to contribute (thankfully).

I think there's some danger for selection bias towards horror stories, especially in the way you've billed the site as a tool of empowerment. The patients who have powerful stories of being treated well aren't in need of that, so much as a forum to give thanks. And still, I think, a less powerful draw.

Thanks a-b. I share your concern that the site might end up running to the lurid. My hope is that framing the discussion as one with potential political impact might off-set that tendency, at least somewhat. I feel there needs to be enough "other" content to draw attention and contributions from folks who aren't angry or suffering.

There's another trend-bias that the doctors involved in this are worried about - the evangelists of alternative medicine (homeopathy, faith med, eastern med) swamping the site. I had a meeting last night with some doctors in the publishing industry whose support we're looking for. I mentioned that a non-denominational prayer board might be seen as a valuable feature for many people.

Yikes! That got ugly. You'd think I'd proposed opening a Faith Healing Clinic. But I do tend to agree with them that a site captured by alt-med quackery isn't an outcome I want. There's undoubtedly a tension between the "demotic means" and the "preferred ends" of this site.

I'm not sure how to come out on that. I feel like we can encourage a certain kind of participation by leading with example... but once that's done the site is likely to go its own way. I could live with that... but it's a tension in the project's scope.

Hey Geoff:You don't really owe me anything like an explanation. The advisability of what you're doing compared to what you might be doing is something I can't really assess from way over here.

I'm going to trust that you are weighing considerations, that there are people around you who you can trust to tell you when you're going off the rails, and that you're not suddenly pursuing tangents with an uncharacteristic fervor that's distressing or confusing to the people who most care about you.

If this latter were the case, particularly if accompanied by a newfound sense of calling and a set of epiphanies, or newfound insights that illuminate a deeper level of understanding in which everything sort of makes sense, I'd strongly advise you to find a way to keep this in check and I'd encourage you to email me. In that case, I'd be concerned about whether or not you were caught in a problem that seems to affect an inordinate number of very intelligent and productive people.

Since it's almost certainly not the case, I'm not going to worry too much about your capable adult self.

Good luck with all of your various projects! It's no wonder you made some poor bank manager squirm a little.

Speaking of which, I got a Phish email yesterday from a company wanting to assess satisfaction with Paypal's response to my recent report of unauthorized account access (I haven't make any report), and I thought of you.

After they gave me a dismissive reply (saying because it wasn't paypal, they couldn't investigate, but would I be so kind as to do their job for them?), I sent them this reply:

Actually, no, this is a stupid "pass-the-buck" excuse to refrain from an investigation you should be making.

For example, you should be able to tell that I haven't made any complaints aboutunauthorized account access lately, which casts the whole thing in a suspicious light. You could find out whether or not your company (PayPal) is contracting withthis company for their services. Last, you could check to see where the link goes,and verify with that company (assuming you do contract with them) that the link goes to the right place.

What you have just demonstrated, however, is that your commitment to investigateprobable phishing is cursory at best. Instead, you invite me to go clicking on links that could potentially expose me, rather than looking yourself.

Thanks for nothing. This has been a most disheartening, though illuminating, littleexchange.

[TenaciousK]

I was thinking about how nice it is that you can be such a powerful advocate for yourself, and wondering how many people get taken because they aren't.

Perhaps I don't understand your ultimate plans, but your project seems unhelpful to me. Thinking of questions one would like to have answered, I do not see your project producing any data of use in answering them. Perhaps the stories are useful for informing one's sense of potential questions to be asked and then one could labour to produce the data required, but. . . There are so many useful questions to ask that if you had any real data, it'd be sure to be helpful somewhere. I suppose it would take a rather different approach to your project to be useful in that way. If your project is successful it seems to be it will primarily be a tool for various self-interested parties to bludgeon other ones (and unhelpfully, since the data will be unhelpful at really showing anything). Yadda Yadda, I suppose.

Also, I'm curious why your docs had never seen anything like it before - do you know if it was the masgnitude, frequency, duration, regularity, etc that suprised them, particularly, since (browsing about on med forums for 5 minutes) folk ultimatly diagnosed with stress disorders describe symptoms not too dissimilar to yours. Incidentally, you do sound like you were stressed (ignore psychological connotations). I wonder if they suggested ongoing behavioural changes you might make (e.g., sleeping more, exercising more, changes in diet, etc). That acupuncture had an effect (through placebo-like mechanisms) quite plausible. "placebo" not a dirty to me, by the way (and ignoring the usual psychological connotations). Skimmed your piece, so feel free to skip if redundant.

I'm not sure what questions "one" would like answered. But the research component of the project has engaged the interest of at least a few academics. If it were just me, I'd think its benefits would be largely ethnographic and/or rhetorical. But I assume that "one" might devise questions which could be usefully posed of the dataset. "Natural language analysis" gets bandied about with the frequency of a buzzword. I'm agnostic on that, but I may as well trust it.

One of your speculations - a repository of suggestive beginnings of inquiry strikes me as potentially "useful."

I wouldn't want to conceive of this project as "building a better truncheon." But if I can say nothing more for it at its conclusion, that could serve as a personal lesson.

As for my own condition... I'd venture that the combination of severity and regularity set it apart. We're not talking a run-of-the-mill tic. To the neurologists in the early days and the psychiatrist throughout, its lack of an identifiable cause also attracted interest.

Behavioral changes... I slept more by default (I was taking massive amounts of sedatives for several months). I got a lot of lectures about my smoking. My diet was analyzed, but the only recommendation on that score was the Vitamin B supplements.

The most common retrospective lay diagnosis is that I was stressed and the acupuncture was a placebo. I'm not saying you've said so much. For what it's worth, I was stressed. I wouldn't consider it an atypical degree of stress and this was obviously an atypical event. So, I'd think, at a minimum, that there'd be some independent catalytic cause.

The placebo thing is a possibility, and I'd agree that there's nothing wrong with a positive placebo outcome. But my "gut doesn't like it" for the simple reason that I thought acupuncture was bunk before going in, and I had built up such a roster of adventurous failures in the course of my therapy that I had no expectation of a positive outcome. I've heard a lot of inventive reasons for why I was primed for a psychological recovery despite those reservations.

At the end of the day, I've treated it as an "unexplained malady" and hope never to see it return... though I try to give the acupuncturist's "evil wind" theory its fair air time... there is, after all, some evidence to suggest he was right. Whether the condition was psychological or neurological (is there a difference?), it's still clear that I am capable of hosting that network of symptoms. I simpyl hope that they won't return. I don't have a lot of confidence that acupuncture would prove to be a reliable remedy if I had to try again... though it would be a natural starting point if I ever have a relapse.

Natural language analysis is being bandied about in the context of your project specifically? Or do you just mean you think the term is bandied about enough in other contexts one might as well imagine it applicable here? In any event, I think it's a bad sign. Yes, it's not impossible to apply the methods of computer science to such data as you may produce. This would be piling one experiment on top of another if you were then to use the results of such methods to answer specific questions related to its own content. Further, to glean the level of specificity possible from even warped and selective, but common and "objective" questions (multiple choice, ranking, etc), seems unlike in you case. So that it is hard to imagine your output's being of use to anyone in the world to me, except parasites. You can find an academix (usually many) interested in anything, but their expertise is not too helpful out of their field. Not my business, but were I you I would be looking at survey design (if only in conjunction with your stories), based on at least a general idea of what questions need to be answered.

For example, one might wish to know, of people very unhappy with their level of medical care, what fraction believed it was doctor incompetence, doctor neglect, of whtever? One might have follow-ups sorting out whether, for example, it is duration before refferal to a specialist that is problematic (or whatever). Again, nothing I know about, but I suspect by asking initial level of unhappiness, self-selection bias minimized (e.g., each group rep a random sample, just proportions off). But pehaps not - there are certainly many people in the world who would help you with that problem, I expect. If it is your problem, which I expect it isn't.

As for your own ilness, not a big deal, but I don't men placebo-like effect in quite the way you're reading it. There are interesting (physiological) models for the placebo effect and most of them allow belief to be absent for the same mechanism to be put into play.

Quite independent of wrangles about what constitutes useful data in medicine, the extreme sample-selection bias seems obvious. I suppose the adversarial model of advocacy can be useful, but only in contexts where generating helpful evidence for interested parties is somewhat hard. In a system which treats millions, putting together several dozen (sincere) horror stories shouldn’t be difficult at all. Perform a million surgeries and you’re sure to leave a knife inside someone’s stomach. I think a necessary condition for the site to be of any use is to adopt a carefully neutral tone in solicitations (“send us your nightmares and miracles”) than being an overt prompt to air grievance, even though it’s clearly not a perfect screen.

I do wonder why we should expect effective healing methods to be non-dehumanizing. I couldn’t/shouldn’t perform heart surgery on my dad even if I were qualified, since I lack the objectification and distance that I think is necessary. Disease itself is dehumanizing, since it breaks down the mind-body duality that we assume at a day-to-day operational level. If I had renal failure, I’m not sure I’d like the doctor to define me as an agonized soul rather than a malfunctioning kidney on legs. Maybe healing body and soul is best done through division of labor? Dichotomy imposed on continuity to make a point, as usual.

1) The science: I've sort of been playing Scarlett O'Hara on that question. Your critiques seem reasonable, and I'd have them myself. One thing that has me somewhat disconcerted is that the science guys have beggared out of every call or meeting I've been in on. So I've only heard a lot of excited talk from lawyers and doctors about the research potential.

I know there's a doc with experience at the Harvard School of Public Health involved, and some Berkeley prof who wants us to take a PhD on board. The doc's specialty is apparently surveys and questionnaires.

At some point, I hope to hear from them about what they hope to do with the site. For the moment, I'm operating on the premise that my task is building a functional site that is attractive to a diverse readership.

I have worried some that there might be some serious flakery coming. I've talked with a medical anthropology post-doc at the Kennedy School of Government about this project. He likes it and would love to get involved, though he sees it more as a "good work" than something with legitimate academic creds. By your standards, I think he's pretty far down the "critical" side of academia's method wars.

My impulse is that there's way too many distortions in a website of this kind to generate reliable analytic data. But if one is willing to lack formal rigor, there's always things to be learned. And at any rate, polls and surveys have a lot of potential from "my side" (content) that make it a sideline worth indulging.

However, I'd be interested to hear more about your reservations. "Natural language analysis" has been bandied about as a component of this project. I've been getting it indirectly, so I don't know what's getting lost between me and the lamppost. However, I'd welcome more information on the pitfalls and perils you might anticipate. Ghost, your comment on "parasitism" especially interested me. I've forseen futility problems, but I haven't noticed anything that struck me as ethically problematic. If I'm missing something, I'd be grateful to have it pointed out to me.

2) The content. I'm trying to anticipate problems with what kind of community this might become. On the one hand, I'm content to throw this out there and see what comes of it (i.e., a quantitative success wedded to a qualitative failure isn't necessarily a "bad" outcome from my perspective). On the other hand, I'm trying to take the prophylactic measures I can to subtly encourage the forms of participation I think we'd prefer to see. With that in mind, I'd appreciate a critique of the following "working language" for our "hello pitch." If anyone would be so generous as to check it out and let me know, I'd be grateful:-----------You have a health story. You started telling it with a holler, the day you arrived in this world. You’ll finish it with a sigh as you draw your last breath. In that sense, you're just like everyone else. But everything you experience in between will be unique to you. You're the only one who knows your story. Only you can tell your story.

Have you ever been perfectly healthy? What was that like? Have you ever been seriously ill? How’d that go? Have you cared for a loved one through a prolonged ordeal? Has your life been transformed by a sudden disease or condition?

American Health Stories is a community of people like you: the same flesh, the same blood, in sickness and in health. Please take a moment to share your stories, so that others might learn from your experiences. Please take a moment to read the stories of others. You might be able to help another through an ongoing struggle. Who knows? Someone here might even have something to teach you. Please take a look through our site and consider joining with us today.

I spend some time (less than before) reading Catholic blogs. If your only window into the thoughts of a typical American Catholic were these comment threads, you'd think that most American Catholics think JPII and Benedict have not been forceful enough in enforcing orthodoxy, are dying to hear homilies about contraception and homosexualty, and were almost driven from the Church by squishy religion teachers. Here's a sample.

I don't think that quite jibes with the lived experience of most Catholics.

People who are satisfied with their experiences generally don't look for a forum to write about it.